Don't know what I've got.
I've never been diagnosed beyond 'chronic migraines and cluster headaches' which is a phenomenal understatement, what I've got doesn't really fit that, so I was wondering if anyone knew any more specific conditions that would match what I have.
I have a migraine every second of every single day, including sleep, sometimes it gets worse, sometimes it gets better, but it hasn't gone away in 8 years. It really feels like there should be a name for this.
I also used to have cluster headaches at least twice a day, but a greater occipital nerve block somehow got rid of those (but not the migraine) last year. Hope it lasts a long time.
Just sort of curious to see if anyone had encountered something like this before and if it had a proper name.
Thanks.
Hi there- thanks so much for sharing your story with us. We cannot provide medical advice here but I can relate to the chronic migraine part of your journey. It sounds, from your description, as if chronic migraine is an apt diagnosis. That's my diagnosis, and like you, I have pain 24/7 - it's just a matter to what gradation. I've been living this way for over 17 years. It could indeed be that you have both chronic daily migraine plus cluster headache. In my eyes, having a diagnosis of that combination reflects what you've described. It's not an understatement, in my eyes either- it shows that you are dealing with quite a lot. Here's some information on chronic migraine (which means at least 15 migraine days a month, but many have it daily): https://migraine.com/migraine-basics/chronic-migraine-overview
And here's our information on cluster headache: https://migraine.com/headache-types/cluster-headaches
Are you working with a migraine specialist? We encourage those living with migraine to seek out this kind of doctor as they are best trained to handle the complex neurological condition that is migraine.
Thinking of you and here for you- please stay in touch. Warmly, Holly (migraine.com team).
